Reunions

For the past couple of years, several of us women who graduated from the same high school have met for lunch once a month. I reconnected with several friends that I hadn’t seen in years. We’ve bonded over life’s circumstances and decided that we like each other much better now that we’re older. These mini reunions led to us becoming a planning committee for our 50^th class reunion.

When we think about it, life is full of reunions. A chance meeting in a grocery store, a club meeting, a conference, or a public event can be a reunion. Each year at the Walk to End Alzheimer’s I see some people I haven’t seen in quite awhile. Some return year after year, and others are just beginning the Alzheimer’s journey. These are bittersweet reunions. We are happy to see each other, sad for the circumstances.

Each year at the Alzheimer’s Forum, I have a reunion with my good friends Sarah, Jane, and Kathy. A year is a long time, but it seems that we can almost pick up our conversations from the previous year mid-sentence. We all lost our husbands to dementia and developed an amazingly strong bond. We are sisters of the heart.

We reunite with friends and relatives on social media and make new “friends.” We can keep up with births, deaths, marriages, as well as, what someone had for dinner. The important events are often interspersed with mundane observations, political rants, and too much information. The jury is still out as to whether the benefits outweigh the drawbacks.

We are caught up in our own little world and are shocked when we learn of a friend or family member’s death. What is the first thing we all say when we run into family members at funerals? “We need to get together somewhere besides a funeral!” Sound familiar? Yet, we go our separate ways and lead our separate lives. We never get around to making that call, meeting for lunch, or making that road trip.

Since I’ve joined the Capps Family Band, I spend more time with my birth family than I have in years. Although I’ve not accomplished many of my retirement goals, at least I’ve done well in spending more time with my mom and siblings. We have two practice sessions a month and play music at three different nursing homes around the middle of each month.

An additional benefit of playing music is that I get to spend more time with my aunt. She likes to hear us sing at the nursing home, so my mom and I pick her up when we play in Versailles. I think I’ve spent more time with her in the past two years than all the years before.

Whether it’s at the grocery store, a family reunion, or a chance meeting, I love running into friends and family. Even if we only have a brief conversation and a quick hug, it reminds me of the connections I’ve made throughout my life. Mini reunions make my heart sing.

      

Copyright © June 2019 by L.S. Fisher

http://earlyonset.blogspot.com

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Love Is Action

Thinking back, I can’t remember how many weddings I’ve attended. The last one, just a few days ago, was for my granddaughter, Whitney. During the ceremony, the minister said something that resonated with me. He read the standard verses from 1 Corinthians 13:4-8 that I had heard at numerous weddings. After he read the verses, he pointed out that love is described as actions, not emotions.

After the promises and commitment to a life together, I watched my beautiful granddaughter dance with her handsome groom. My eyes blurred with tears at how quickly the years have gone by. I thought of her first “wedding dance” when she was curled in her Grandpa Jim’s arm as she danced between us at her Uncle Bob and Aunt Stacey’s wedding.

The minister’s words about love being actions made me realize a truth. No matter how much someone professes their love, if their actions don’t reinforce their words, they undermine them. Too often emotions stand in the way of logic, self-respect, and in extreme cases—personal safety.

Thinking of love as action is an excellent way to begin a marriage and when the time or circumstances warrant, it is the only way to end a lifetime commitment. Love as action is the best way to describe the love of a caregiver for a spouse or other family member who has dementia.

Love is patient. A caregiver has to be patient and allow her loved one to do as much as he can for as long as he can. Yes, it might be easier and faster to do it yourself, but allow extra time for your loved one to perform daily tasks. As the disease progresses, it takes time and patience to provide the level of care that a person with dementia requires.

Love is kind. As a person loses his skills, it is important to appreciate what remains instead of complaining about what a person cannot do. To belittle a person who has dementia when they make a mistake would make as much sense as kicking someone’s broken leg because they couldn’t walk on it. Being kind will help you sleep better at night.

It is not easily angered. When a caregiver actively cultivates patience and kindness, it would follow that he would be less likely to become angry with his loved one. You may have to constantly remind yourself that it is the disease that is responsible for behavior problems.

It always protects. One of the main jobs of a caregiver is to protect your loved one. You are responsible for your loved ones safety and physical well-being. You may even be responsible for your loved one’s financial stability. A caregiver finds the strength to stand up against anyone who tries to take advantage or abuse her loved one in any way.

Love always hopes. When we can no longer hope for our loved one to regain his health, we can hope that he will have a good day. We can hope for a cure, so that a disease that stripped away our loved one’s talents, his quality of life, or her memories won’t strike others down.

Love perseveres. Dementia is not a sprint; it’s a marathon. A caregiver must have perseverance to provide loving care for years and years.

Love never fails. Unconditional love is about the only way to describe caregiver love. We all expect the love we give to be reciprocated, but when dementia is involved that may not be the case. When it comes to dementia, a parent or a spouse may become like a child. Instead of fading away, your love may become stronger as it evolves into a different kind of love—one that is action combined with the emotional memory you hold in your heart.

 Copyright © June 2019 by L.S. Fisher

http://earlyonset.blogspot.com

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Early and LATE Dementia

From the day Jim was diagnosed with an Alzheimer’s type of dementia, I researched the disease through all sources possible. I used the Internet, books, pamphlets, watched TV specials, and talked to some of the top researchers in the country.

My conclusion was that early onset dementia and dementia in older people seemed to be two different diseases. It seemed obvious to me that early onset progressed much faster. That didn’t seem logical since younger people generally started out with healthier bodies. Yet, I found that the median life expectancy of younger-onset Alzheimer’s was six to eight years. For those diagnosed with Alzheimer’s later in life, the average life expectancy was ten years, but could be as long as twenty years or more.

Now, researchers have discovered that some seniors who had been diagnosed with Alzheimer’s actually had a type of dementia identified as LATE (Limbic-predominant Age-related TDP-43 Encephalopathy).

Although LATE mimics Alzheimer’s disease, the proteins beta-amyloid plaques and tau tangles that are the hallmark signs of Alzheimer’s do not cause the dementia. LATE is caused by deposits of the protein TDP-43 (transactive response DNA binding protein of 43 kDa) in the brain.

The report identifying LATE was published in the April 30, 2019, issue of the journal Brain. This is a major breakthrough in how researchers will look at dementia in older adults. LATE is believed to affect 25% of seniors with dementia who are eighty-five years or older. 

At the Alzheimer’s Advocacy Forum in Washington, D.C., advocates often receive reports from Richard Hodes, M.D. director of the National Institute on Aging (NIA), part of the National Institutes of Health (NIH).  This latest development in the study of dementia can be seen as an opportunity. Dr. Hodes said, “The guidance provided in this report, including the definition of LATE, is a crucial step toward increasing awareness and advancing research for both this disease and Alzheimer’s as well.”

Abnormal TDP-3 had been previously identified in ALS (amyotrophic lateral sclerosis) also known as Lou Gehrig’s disease. TDP-3 has been found in FTLD (frontotemporal lobar degeneration). FTLD is a group of disorders that affects the frontal and/or temporal areas of the brain. FTD (frontotemporal degeneration) is a rare disease more commonly found in those younger than sixty years of age.

The progression of LATE is slower than Alzheimer’s disease. When LATE and Alzheimer’s disease are both present, the disease progresses more rapidly than either disease does alone.

The information from this study came from brain autopsy reports. We had an autopsy on Jim’s brain for the simple reason that I wanted to know what disease he had and whether it was hereditary. Of several terms used in his autopsy, I recognized a few: neurodegenerative disorder, incidental Lewy body, frontotemporal atrophy, swollen neurons, and tau positive glial inclusions. The cover letter said that Jim showed no signs of Alzheimer’s. He had corticobasal degeneration, a rare (non-hereditary) disease, and one I had never heard of.

Treatments targeting beta amyloid plaques would not be effective in a disease that does not have the plaques. Rare diseases do not have the funding of diseases that are more common. Funding Alzheimer’s research is our greatest hope of finding effective treatment for other types of dementia.

Sources:

https://www.nia.nih.gov/news/guidelines-proposed-newly-defined-alzheimers-brain-disorder

https://www.sciencedaily.com/releases/2019/04/190430121800.htm

Copyright © June 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ